The FSHD Society is holding a landmark meeting today in which individuals and families living with facioscapulohumeral muscular dystrophy (FSHD) will tell representatives from the U.S. Food and Drug Administration (FDA) about how the muscle-wasting disease affects their health, and what they hope future treatments will do to improve their quality of life. One of… Read More »
Facioscapulohumeral muscular dystrophy community speaks to the FDA
FSHD Society opens its first global, online educational conference
The FSHD Society announced the opening today of its FSHD Connect Classroom, the first online, full-day educational conference in the organization’s history. The online conference takes the place of FSHD Connect, the premier global educational meeting for facioscapulohumeral muscular dystrophy (FSHD), which was cancelled this year due to COVID-19. Nearly 300 individuals and families living… Read More »
27th Annual FSHD International Research Congress Goes Virtual
The FSHD Society announced the opening today of its 27th annual International Research Congress (IRC), which is being conducted entirely online for the first time in the organization’s history. The conference is widely seen as the premier global platform for the discussion and dissemination of state-of-the-art research on facioscapulohumeral muscular dystrophy (FSHD). A record 210 researchers,… Read More »
Landmarks and Social Media Are Turning Orange This World FSHD Day
This Saturday, June 20, 2020, the FSHD Society, the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), will be joined by dozens of advocacy groups and allies around the world in celebrating the fifth annual World FSHD Day, a global 24-hour campaign to raise awareness for the disease. On World FSHD Day, the Society will… Read More »
Listen to our Giving Tuesday Interviews
You can now listen to our GivingTuesday Telethon interviews from our December 3rd event. Streamed over Facebook Live, our Telethon host Tim Hollenback interviewed dozens of leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of FSHD. Their stories were utterly compelling, and the sense of optimism for a treatment… Read More »